newbie

[Blackwidow1965]

thank you for adding me. My elderly mother has just been diagnosed with and under active thyroid and, as I know nothing about it, I’m on a steep learning curve!

[greygoose]

Welcome to the forum, Blackwidow1965. Ominous name! lol

If you have the slightest little question don't hesitate to ask. That's what we're here for, to help people understand. It can be very confusing at first, but you soon get used to it.

[Blackwidow1965 in reply to greygoose]

Lol thank you so much for your reply, it sure is confusing!

[greygoose in reply to Blackwidow1965]

You're welcome.

[SlowDragon Administrator]

welcome to the forum

First thing is, do you have any actual blood test results? if not useful to get hold of copies. Keep good records of how she is feeling on each dose levothyroxine

She is legally entitled to printed copies of her blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

Link re access

patients-association.org.uk...

healthunlocked.com/thyroidu...

In reality some GP surgeries still do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

standard STARTER dose for someone over 65 years old is 25mcg daily

Levothyroxine is very fussy hormone and needs to be taken on its own, with water on empty stomach and then nothing apart from water for at least an hour after

No other medication or vitamin supplements within 2 hours. Some like iron, calcium, vitamin D, omeprazole at least 4 hours away

A weekly pill dispenser is helpful to ensure it is taken every day

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

Dose will be increased slowly upwards over 6-18 months

For full Thyroid evaluation she needs TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

Low vitamin levels also much more common as we get older

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

[Blackwidow1965 in reply to SlowDragon]

That is such a helpful post, thank you for being so informative. I am going to go and read this all carefully and try to digest it! I have just got some of her blood results over the phone, and they are TSH 6.10, T4 10.3. There was no T3 figure. These numbers mean absolutely nothing to me, any chance someone could clarify for me? Are they good, bad, or indifferent?!

She is 87 with CKD stage 4/5 and heart failure. She also has rheumatoid arthritis.

[SlowDragon Administrator in reply to Blackwidow1965]

CKD may well improve on levothyroxine

ncbi.nlm.nih.gov/pmc/articl...

The GFR is reversibly reduced (by about 40%) in more than 55% of adults with hypothyroidism[40] due to several reasons

Hypothyroidism results in a reversible elevation in serum creatinine due to the reduction in GFR

academic.oup.com/jcem/artic...

[Blackwidow1965 in reply to SlowDragon]

Well, I had no idea about that. Thank you.

[SlowDragon Administrator in reply to Blackwidow1965]

TSH 6.10,

T4 10.3.

There was no T3 figure.

Was test done early morning

Ft4 - need range

TSH just over 5

Usually requires 2 tests over 5

Starting levothyroxine - flow chart

gps.northcentrallondonccg.n...

[Blackwidow1965 in reply to SlowDragon]

Blood test was done at 1pm, she would have had a small bit of buttered white toast late morning with a hot chocolate, does this affect things?

[Blackwidow1965 in reply to SlowDragon]

thank you. So do those two figures indicate how bad the thyroid is?

[SlowDragon Administrator in reply to Blackwidow1965]

TSH would have been higher at 9am

How much higher difficult to say

Many GP’s wouldn’t diagnose until TSH over 10 especially in the elderly

Impossible to say how good or bad Ft4 is without range

Range Could be 12-22 in which case Ft4 is below range

but range could be 7-14 in which case it’s wouldn’t be low

Essential to test vitamin levels and thyroid antibodies for autoimmune thyroid disease

Rheumatoid arthritis is autoimmune so it’s likely autoimmune

we some people getting diagnosed with TSH over 100, but more often diagnosed with TSH between 5-10. Higher TSH doesn’t necessarily mean more hypothyroid….in fact people with very high TSH often make excellent recovery because their TSH is highly responsive

[Blackwidow1965 in reply to SlowDragon]

Ah, thank you, but I’m really struggling to understand this. I really know absolutely nothing about under active thyroid glands. None of these figures or abbreviations mean anything to me!

[TopBiscuit in reply to Blackwidow1965]

TSH stands for Thyroid Stimulating Hormone. It comes from the pituatary gland and informs the thyroid how much thyroid hormone it should produce. T4 is the thyroid hormone that is in the bloodstream which is then converted to T3 which is what allows the body's cells to access the hormone. I think that's about it but don't quote me on that!

A high TSH can mean that the thyroid is struggling to produce enough hormone and conversely a low TSH can mean that either the person is experiencing hyperthyroidism or they are being over medicated with levothyroxine. Hyperthyroidism is too much thyroid hormone in the system and hypothyroidism is too low.

When blood results are given, they should also give the range that is considered normal. This is important because ranges can vary from lab to lab, which doesn't mean that they are changing what is considered a normal range, but it has something to do with whatever procedures the lab uses or something.

FT4 means 'free T4' which is referring to the thyroid hormone in the bloodstream.

I know it can be very confusing! Feel free to ask questions.

[Blackwidow1965 in reply to TopBiscuit]

Thank you so much for starting to explain some of the terms! There seems to be so much to learn about this condition, and I’m not sure I have enough time to devote to it. Clearly I need to have a phone call from a doctor at her surgery and not just a quick chat with the receptionist!

[TopBiscuit in reply to Blackwidow1965]

Oh yes, I would definitely want to speak to a doctor. Can I ask, what are your concerns specifically? You say your mother has been diagnosed but you don't say what the doctor is wanting to do about it.

[Blackwidow1965 in reply to TopBiscuit]

That’s because the doctor (useless article that he is) simply told us that she has low thyroid function, and said he was prescribing her with levothyroxine 25 mg. Neither of us had any idea that she might have this, and knew nothing about it. He told us nothing else, and of course we didn’t think to ask anything further because we didn’t know enough about the subject to ask any questions. I rang her docs this afternoon to arrange a phone call, answer. Of course, I will have to call back early tomorrow morning to do that! So I am hoping I may actually find some information then.

[SlowDragon Administrator in reply to Blackwidow1965]

Your mum will need to get printed copies of blood test results and ranges.

What has GP suggested happens next

[Blackwidow1965 in reply to SlowDragon]

Yes, I will get further info asap. The doc simply told us that the latest blood test showed that she had low thyroid function and that he was prescribing levothyroxine 25mg, and that was the end of the appointment. He is not the best of doctors.

[SlowDragon Administrator in reply to Blackwidow1965]

So she needs to take this every day, either waking or bedtime on empty stomach and nothing apart from water for an hour after

no other medication or supplements within 2 hours

Retest in 6-8 weeks time

Dose levothyroxine will increase over coming months

[Blackwidow1965 in reply to SlowDragon]

brilliant, thank you.